Can a dream become reality?

This past Sunday I attended a fundraising event for Medicine for Humanity headed by Dr. Leo Legasse. The non-profit group takes doctors and nurses from UCLA to underserved countries (most recently Uganda) and teaches the local professionals newer diagnostic and surgery skills.

However, the Westerners who do this invariably say they learn more than those they teach. They are reminded of why they became doctors and nurses. They work under difficult conditions at a small rural hospital where resources are limited and lives hang in balance. They do what they can and the baby steps lead to bigger ones.

It's not unlike the first trip to the Moon. People said it couldn't be done. NASA did a lot of planning and training. It took time. Then the astronauts did it. "One small step for man. One giant leap for mankind." The dream became reality.

In the beginning when I learned of Kairit's diagnosis, I went on warp speed. I devoured the internet looking for information on ALS. Surely there had been advances since Aunt Geri had it. I wanted to know everything about symptoms, clinical trials, and best doctors. I wanted to raise $25 million for research. I recently learned that is the same amount the ALS Association is hoping to get in government funds during its Advocacy and Public Policy days in Washington, D.C. on May 9-11. So, I have had a reality check. We are going to take baby steps.

I heard today that the friendly lawyer from Canada who also had stem cell treatment in Duesseldorf when Kairit did, is not doing so well. He, like she, has not had any noticeable improvement. But Kairit has remained stable. His condition has progressed and he now needs a wheelchair to get around. He works on a part-time schedule. He's going to Sunnybrook Hospital in Toronto to check out a clinical trial. Thus is the struggle of ALS patients...a constant search for hope. Unlike most diseases where we have a potential wellness partner in drugs, in chemo, in surgery or in some other kind of therapy, ALS has no such offering.

Kairit is bored at home. It's tiresome even though she does little and can do very little for herself. She keeps in touch with friends and writes emails to thank those who have contributed to a fund at an Estonian bank to help pay for her care. There are many generous people, strangers, in fact, who have sent money to help Kairit cover the cost of the stem cell treatment. She survives on a small government stipend for disabled persons, just enough to cover basic necessities.

We continue to look for a clinical trial in Europe that she can participate in but thus far, to no avail. Her next appointment at Tartu University Hospital is on April 19 but there is no joy in noting that on the calendar. What can the doctors offer? Her son, Kent, leaves Estonia that day for England where he will live with friends and seek his future hopefully as a trained chef. Kairit misses him even though he has not yet left. Being a single mom can be lonely sometimes. Being a single mom with a terminal disease and a son beginning his life's journey is hard to bear. On one hand Kairit is happy she gave her son wings to fly. On the other hand, it's hard fighting ALS without a smiling, familiar face and a child to hug.